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Getting Health Answers: A Double-Edged Sword

Jan23

Posted by:ACHA1/23/2014 1:15 PM

By Becca Atherton

Back in December I was medivaced from Phoenix to California because I was experiencing atrial flutter (AFL). The doctors were able to pace me out of it and I got to go home right in time for Christmas. But just two weeks later, I was back in AFL and had to fly up again. They were, once more, able to pace me out of it, and now there is a setting on my device that if I go back into AFL, my pacemaker/ICD will make a sound letting us know. On top of that, I was also started on a few new medications, one of which is Coumadin.

I’ve been out of the hospital for a little over a week or so now, and while I am no longer having AFL, I am having some other symptoms. For a while now, my appetite has just not been what it used to be and when I eat even just a little, I tend to get sick to my stomach.

On top of that, I am so tired so much of the time and I am getting out of breath more than I used to in the past. The doctors think that it is a side effect of a new medication they put me on for my pulmonary hypertension (PH), so they are going to switch me back to my old one. They aren’t sure why I am getting out of breath so much quicker, but they have scheduled a CT scan for this week to see if it’s my lungs. If it isn’t my lungs and the symptoms don’t go away after a few days of being off the medication, then it is most likely the right side of my heart and/or my PH getting worse – in which case there is talk about a cath and starting an IV medication.

The idea of having an IV medication has never been one that I liked, mainly because of how I would look with a pump. We have been able to put it off for a while now – but I’m worried that the time has come for me to suck it up, stop being vain, and get it.

It’s a double-edged sword, getting answers as to why I’m feeling so crummy. I want to know so we can fix it, but on the other hand, I don’t want to know because the solution may not be one that I like. I think that at age 21, I’ve dealt rather well with having to get surgeries and a pacemaker, use new medications, implement lifestyle changes – and anything else I’ve had to do for my health.

I feel like I want to throw a temper tantrum because I am so tired of having to do all of this. I know it’s not a very mature response, and I’ll end up doing what I’m supposed to do because I want to live, but I can’t help but feel sorry for myself right now. And I’m not sure how to get over it…

Your thoughts and support are so appreciated during this difficult time. Thank you so much for your love – it means more to me than you’ll ever know.

Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 21 years old and a college sophomore at her local community college. She loves to read, perform American Sign Language to music and write on her blog.

Hang in there! It's normal to feel sorry for yourself! I just turned 34. I was born with TOF and pulmonary atresia. I had a pacemaker/defribolator implanted 3 years ago but had it removed last march because of endocarditis. I've had surgeries and procedures and have been in and out of the hospital my entire life. I'm recovering now from yet another valve replacement. There have been plenty of times where I've asked "why me?" and have been tired of it all. But trust me...it's worth it. I have a great husband and two beautiful boys...I will put up with whatever I need to to improve my quality of life. It's tough..everyday...but so are you!

By Lauren on 1/23/2014 3:15 PM

Re: Getting Health Answers: A Double-Edged Sword

I know how frustrated you are..I myself was born Hypertrophic cardiomypathy. Always felt server flutters and SOB. The day after my 38th birthday I had a pacemaker/IDC. Still contined to have severe SOB as well as dizzyness. 3months later they decided to move led in pacemaker and scheduled a TEE(enodoscopic echo of heart) found I needed a mital valve replacement, since I was not getting any blood flow to brain or body as I needed open heart surgery ASAP. Its been 7 wks now and I have no more shortness of breath, nor dizzyness..SO FAR. If you have not have the TEE done i highly recommend to do this. This gave my heart surgeon a up close view of what was actually going wrong with my heart. Without this I dont think Id be here today. Dont give up and when you dont feel right then something is definitly wrong. Get second opinions and keep at your Cardiologist when something is not right. It is so frustraing feeling tired all the time, short of breath and not able to be active simce you are so young. I would cry at hospital or even at home because I just wanted to feel normal. So cry if you need to and no its not immature to feel this way. Not very many people feel the way we do and sometimes we need to let it out every once in a while. But stay strong and know you are not alone. I will pray for you and hope for a speedy recovery.

By Joanna A on 1/23/2014 3:17 PM

Re: Getting Health Answers: A Double-Edged Sword

So you want "my thoughts"? Im thinking you will do what you need to do. It's not about your maturity or a temper tantrum its about life. You want to live, well------ LIVE LIFE. Put a saddle on life and ride it, pull up your big girl super woman panties and live. We don't make excuses, we go, go, go! We go to the Doctors, we go to the hospitals, we do all the right things, take all the med's so we can LIVE. Never think why, why, why,---think--yep i'm living.

By larry on 1/23/2014 4:43 PM

Re: Getting Health Answers: A Double-Edged Sword

Dear Becca,It's good to let your feelings out. You will be fine! The care and treatment of CHD has advanced so much and continues to do so. You are a hero and a fighter.

My daughter has DORV (double outlet right ventricle) with pulmonary stenosis. She's almost 18 and is doing great. And deciding where she will go to college. God Bless You!

By Diane K. on 1/24/2014 1:05 PM

Re: Getting Health Answers: A Double-Edged Sword

One of the greatest blessings we all have is tears. They help us to get our feelings out, then we feel relaxed and "cleansed." I'm glad we can cry, because it helps our emotions to get back into balance. So, shed the tears, then smile, because your emotions have been expressed in the best way that they can.Take care of yourself. We'll be here when you feel better, and when you're able to say you have good news.'Kay?

love,Connie

By connie on 1/27/2014 9:03 AM

Re: Getting Health Answers: A Double-Edged Sword

Hello Becca,My name is Kami I want you to remember this what you have endured is astonishing. You are a true miracle and a survivor please hang in there with what the doctors say I myself have had many many setbacks (i was born in 1968 with transposition of the great vessels) I consider myself a true survivor as you are! if you ever need some one to chat with look me up on facebook Kami montgomery) I am also on many medications including coumidin which does take a while to get used to and learning what not to eat but it has worked for me your amazing stay positive and spiritual we are here for a reason and you are not alone.